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AVM Survivors Network

Hht

Hello all! my name is kaleena and i was wondering if anyone on here has the genetic disorder called HHT??? It’s linked to AVMs. If you would like to know more about it go to hht.org.

No, never heard that but I will check this out. thanks.

Hi Kaleena,

I am new to the board but I have HHT and have done lots of research on it. It's very frustrating when my doctors have no clue what I am talking about when I list it as one of my conditions. I have even printed a sheet or two out for them and some of them just push it aside!

Mine started with nosebleeds. I now have a brain AVM that was just found while looking for something else on my MRI. I am so nervous about this. I have to go to a Neurosurgeon next for an opinion. I'm not sure what to do about it. I think I will definitely get a second opinion either way since I've read that many people with HHT are born with AVM's in their brain. I do have what has finally been diagnosed as, "migrains" from a Neurologist who does not think that they are related to the AVM. I'm not so sure....I just started having these three years ago....She said that most times, the Neurosurgeon won't do anything with it. It worries me....I'm not sure if I should or should not proceed with surgery? Have you experienced this? Thank you so much for your post. Jami

Hi Kaleena.   I am familar with HHT.. To my knowledge, I don't have it though.  Well, I don't think I have it  (let me put it that way.)   It's a very good question.